There are a lot of fake diagnoses out there – and you’ve probably received more than one of them!
If you have fibromyalgia or chronic fatigue syndrome you have likely been told (probably more than once) that your symptoms aren’t real; some (maybe all) are just in your head.
Maybe you’ve even heard this enough times that you are starting to question whether or not what you’re experiencing is really real.
Are your CIRS symptoms legit?
Yes, your symptoms are very real. Well-meaning practitioners are just running the wrong lab tests. And obviously if you continue to look in the wrong places, you’re never going to come up with any meaningful results.
If you’re starting to consider your collection of strange symptoms may be CIRS, you’ve come to the right place. The aim of this post is to guide your investigation in a way that inspires critical thinking. By the end of it, you should be able to spot fake diagnoses from a mile away.
When you start looking in the right areas, you start revealing the cause of your symptoms. That unexplainable, crushing fatigue suddenly makes sense. Mysterious body pains that come and go indicate the inflammation occurring within your cells causing the pain.
Your symptoms aren’t fake. They just haven’t been properly investigated.
If your symptoms aren’t fake, what’s causing them?
We’ll tackle that question in the next section!
Why some diagnoses are fake
Have you tried telling your family doctor that you’re dealing with candida overgrowth?
What about adrenal fatigue?
If so, you probably received an eye roll followed by a dismissive tone saying that those aren’t real conditions. But your doctor is right. Those aren’t real conditions – at least according to the evidence.
The problem with conditions like adrenal fatigue or candida overgrowth is that their symptoms are vague and non-specific. When you’ve got a vague list of symptoms, they fit almost any condition.
How many of you are dealing with:
- Low energy
- Afternoon fatigue
- Brain fog
I’d bet nearly every reader resonates with those symptoms – at least some of the time. I sure do. But these are perfect examples of non-specific symptoms. Meaning that they don’t point in the direction of anything in particular. Almost every chronic illness, from heart disease to cancer, has these three symptoms associated with it.
Contrast this with a symptom of an incredibly itchy rash composed of small fluid-filled blisters. If that symptom made you think of chickenpox, you’re on the case! An itchy rash with small fluid-filled blisters is a specific symptom. It points directly at a specific illness – chickenpox.
My three-step method for identifying real vs fake conditions
Before we put CIRS through the wringer to see whether it’s a real or fake condition, let’s establish a framework for identifying whether any condition is real or fake.
Criteria for a condition to be legit/real:
1) The condition must have specific symptoms described in peer-reviewed literature
2) Peer-reviewed literature must publish objective diagnostic criteria
3) There needs to be a positive response to treatment
A condition is real once it meets all three criteria.
Let’s break each of these down…
1. The condition must have specific symptoms described in peer-reviewed literature
This means that there needs to be a published list of symptoms that are unique to a particular condition. When I say published, I don’t mean on a blog or website. I mean submitted to medical journals where peers of the author(s) can review the symptoms. Anything less than this won’t do.
Let’s use fibromyalgia as an example. Fibromyalgia has a clear set of agreed-upon symptoms that are consistently found in medical texts. The American College of Rheumatology states the symptoms of fibromyalgia as:
- Widespread pain throughout the body
- Unrefreshing sleep
- Cognitive (memory or thought) problems
Multiple other texts list these same symptoms. Even though these are not specific symptoms, if they are experienced together it’s more likely that they are caused by fibromyalgia than anything else.
Fibromyalgia passes step one as a legitimate condition because the group of symptoms is specific and consistently listed in the published medical literature.
√ Fibromyalgia passes this step
2. There must be objective diagnostic criteria found in peer-reviewed literature
This criterion is the most important. Without objective lab tests, we’re diagnosing conditions on symptoms alone. A diagnosis based solely on symptoms is not a diagnosis – it’s an educated guess.
Fibromyalgia fails this section miserably. At best, there is a tender-point exam, which is the only test that comes close to a lab test. Basically, of 18 points on the body (shown below), at least 11 of them need to be tender to qualify as a positive diagnosis. However, this test is incredibly weak as fibromyalgia pains tend to come and go with each day. As a result even the tender-point exam isn’t used as much anymore .
For an illness to truly be real, there needs to be objective tests. Ideally, these tests can analyzed by a lab and can be used to track patient improvement with treatment.
⊗ Fibromyalgia fails this step
3. There needs to be a positive response to treatment
This section is broken into two parts. both of which are essential.
- A positive response experienced by the patient
- A positive response shown in lab results
You’re not going to care if your lab tests are improving if you still feel wretched. That’s why this section is composed of two parts – your experience and the change in lab values. Both need to move in a positive direction. If only one of these parameters is changing, further evaluation is required.
⊗ Since there isn’t a reliable way to test for fibromyalgia, there is no way to tell if treatment is working. Fibromyalgia fails again.
Conclusion: Fibromyalgia is not a real condition.
Now let’s apply these criteria to determine if CIRS is real or fake!
Is CIRS real or fake?
Let’s recap. For CIRS to be considered real, it needs:
1) To have specific symptoms described in peer-reviewed literature
2) To have objective diagnostic criteria found in peer-reviewed literature
3) Patients to feel better and their labs to show improvement after and during treatment
If CIRS fails any of these criteria, it’s a fake condition. But if it passes all three (spoiler alert: it does), then CIRS is a real condition.
1. Does CIRS have specific symptoms described in the peer-reviewed literature?
CIRS has thirteen clusters or groups of symptoms and 37 unique individual symptoms. If the patient has at least eight of the 13 clusters, CIRS is suspected. All of the clusters and symptoms have been published (multiple times) in the peer-reviewed literature.
To take it even one step further, the Government Accountability Office (GAO) published a consensus statement recognizing CIRS as a legitimate medical condition caused by a water-damaged building.
√ CIRS passes step one
2. Does CIRS have objective diagnostic criteria found in the peer-reviewed literature?
This is where the fibromyalgia diagnosis started to fall apart. However, unlike fibromyalgia, CIRS has a wide variety of lab tests including:
- Low MSH levels
- Low VIP levels
- Elevated TGF beta 1
- Raised C4a levels
- Elevated MMP-9
- Genetic susceptibility (HLA DR)
- ADH/Osmolality imbalances
- Cortisol imbalances
- Low levels of androgens
The answer is yes, CIRS has objective diagnostic criteria appears in peer-reviewed literature.
√ CIRS passes again
If you want a deeper dive into each of these laboratory markers, I’ve written about them in the post CIRS and Fibromyalgia.
3. Is there improvement in both the patient and the lab values?
Dr. Shoemaker has published data on over 6000 patients treated for CIRS (with more than 2000 cases and 450 controls) that show a positive response to treatment. These improvements are experienced by the patients AND shown in lab tests.
So, yes, there is a positive response to treatment in both the patient and his/her lab values.
√ CIRS passes again
As CIRS passes all three criteria with flying colours, we can confidently say that it is a real condition.
You can take comfort in a CIRS diagnosis
CIRS is real. CIRS is a bonafide medical condition. You should take comfort in a CIRS diagnosis. It’s far more empowering than a diagnosis of chronic fatigue syndrome or fibromyalgia.
Unlike fibromyalgia and chronic fatigue, CIRS has objective makers to evaluate the condition. Most importantly, CIRS has a treatment protocol that works. The Shoemaker protocol gets to the root cause of the illness and gets people better. For good.
CIRS is a complicated illness – but with a proven method of treatment. Fibromyalgia and chronic fatigue are mystery illnesses without proven treatment.
Now, I want to hear from you!
How did this post influence your thinking about CIRS?